Managing Hemophilia Care as a Young Adult Is a Continual Process

Several things often happen when a woman becomes a mother.

The switch of motherly intuition flips on, and many moms can make predictions without reason. (That “gut” instinct usually serves us well.) The overwhelming love for our newborn baby is a connection that ignites and lasts a lifetime.

This mom mode of “thinking ahead” continues to serve me well.

As I’ve traveled with my sons over the years, I’ve first considered how much factor I need to pack. Taking the necessary doses is the first part, but then I have to think ahead to the “what ifs.”

If my older son, Julian, has a bleed, he needs at least two extra doses of factor. If Caeleb’s pain is out of control, I need to take his prescription pain medication along with Tylenol and ice packs. How many extra doses of bypassing agent will I need to take? How many extra needles and dressing kits? And the list goes on. Thinking ahead has always been a good thing.

Yet thinking ahead to the what-ifs can sometimes be a bad thing. Instead of simply trying to be prepared, a person may worry about possibilities that are frightening. What if my son has a spontaneous head bleed? What if I cannot recognize a bleed in my young child? What if we get in an accident?

The what-ifs in these scenarios can be upsetting and even paralyzing. Developing a healthy relationship with the what-ifs is essential as a parent of a child with a bleeding disorder.

My youngest son, Caeleb, is in a season where regular bleeding episodes and hospitalizations are no longer commonplace. The days of living in crisis mode are gone. Julian is currently home for a visit before traveling to Alabama for a month-long training program. Upon his arrival, he took out factor to infuse. This immediately made me happy. Knowing that my adult son manages his bleeding disorder well brings great pride. I asked him if he packed enough factor for his next trip and he looked at me with a bit of panic.

“I don’t think I packed enough,” Julian replied. It was obvious from his expression that he had made a mistake and was a little embarrassed. I immediately shifted into crisis mode, but fortunately, this was not a crisis. I talked him through the next steps, and we developed a plan. Julian will call his pharmacist, determine when he can order per insurance, and have a partial shipment sent directly to Alabama. Crisis averted.

This situation reminds me of the power of what-ifs. Instead of worrying or getting upset, I helped my son think ahead. In this case, it is fortunate that he has time to figure out a solution and is not in need of factor on a weekend without any product on hand. I hope that Julian continues to learn from each situation where a mistake is made or a situation is overlooked.

Managing a medical condition perfectly is not what’s important. When a lesson is learned and a good outcome is the result, then everyone wins. I think Julian is doing a fantastic job managing his condition. This experience reminds me that as a mom of an adult son with hemophilia, my “job” is not over yet, and I am fine with that.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.